Saturday, March 03, 2012


Soren got his MIC-KEY button put in a week ago and I LOVE this "upgrade" in the G-Tube experience. Now instead of a 6 inch tube sticking out of his belly (which made me very nervous) he has this small little port. When it's time to feed Soren, I pop the port open, attach a tube that locks in (yay!) and do the feeds. It's quite slick. I'm still keeping Soren in the binder around his belly because I'm afraid Soren will rub his belly and accidentally pull out the button. I know how to put a new one in, I'd just rather avoid it!

And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!

But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.

Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!

All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!

Nice to have our happy Soren back and better than ever!



Brad Keating said...

This encourages me because Karis has been more grumpy than usual since her surgery, and I was wondering if it was going to be permanent, too. It sure is a bummer when they can't tell you the reason for the grumpiness! Now I will assume she is still probably recovering from the surgery and won't worry too much.


Telofy said...

I’ve read your updates ever since I learned about your blog, and it’s a blessing to hear that this difficult decision for the G-tube has proved to have been for the best. The January update, though, had already put most of my worries to rest.

I wish you all the very best, especially you and Soren of course, but also your daughter and the rest of the family we don’t hear so much about.

(This is rather off topic, but also thank you for the wonderful emails you exchanged with Daniel of the SaveDerpy Tumblr. It’s wonderful to see how a few well-chosen words from you can have such a soothing effect on ten thousands of fans. I hope you’ll be able to return to writing for My Little Pony at some point.)

Carolina said...

Hi, Amy,
I must say we've been following this pretty closely, and you have helped us wrap our brains around getting Ansel's g-tube in. We had pretty much decided before February and its illnesses hit, but those were the reminder that we have to do this to help our boy get what he needs, help reduce our stress (who can't use a stress reduction?!), and possibly make a go at the keto or modified Atkins to put even just a nick in Ansel's seizures. I'm glad you posted this, yet another thing to kind of help give a heads up about what's in store, both the tunnel and the light.

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